Our journey in the Autism Spectrum

Posts tagged ‘differences’

[Ed. Note: for the record I am getting this out there before my son begins first grade. I’ve been trying to find a way to do this book, this teacher, and my son’s peers justice. It was an amazing year!]

My son entered Kindergarten this past fall. Mainstream Kindergarten. After a few bumps along the way, my son’s extraordinary teacher gave me a wonderful opportunity to talk to the class about autism and specifically, Henry. In my opinion it was a great success.

If you haven’t read about my experiences, I’ve posted links here (otherwise feel free to skip ahead to the link of my video at the end of this post):

After my last “class”, Mrs. Kindergarten Teacher and the whole class shared a very special gift with me that I will never forget. With some help from Mrs. KT, they wrote a story with illustrations about Henry and autism. The words and illustrations are theirs. Henry’s own words and descriptions about himself are his as well.

The photos added at the end are a few I had taken throughout the year. (please note that I do not own the rights to the music used).

Our house lit up blue last night and will continue throughout the month of April….and probably beyond as we did last year. All of our family is wearing blue with puzzle pieces today. Lucy and I even have our fingers and toes painted blue. I will wear my autism awareness jewelry that I have acquired over the last year. Ultimately, today is not that much different for us than any other day.

But I wanted it to be different.

This year Henry actually understands that HE has autism. His little sister, Lucy, understands that this year as well.

I wanted it to be so much more for us this year. I have felt an urgency to DO more. But at the same time, I’ve been overwhelmed by it all and in turn unable to do much of anything. Most of all, right now I feel ANGRY and it’s not because my son has autism.

It’s upsetting for me to hear folks in the autism community arguing amongst ourselves about what causes autism, treatments and therapies, which organizations to support or not to support. Actually, I’m pretty pissed off about it. I’m sick of hearing the bickering, the ugly words exchanged. Who is right and who is wrong. Banning folks from Facebook pages, loudly “unliking” a page because we didn’t like something that was posted there. It’s turning me off. And when that happens I want to shut down and walk away.

Inside me I am screaming at the autism community.

Can’t we all just get along, people!?!?! Don’t you see that we are ALL correct?!?! That there is no right and wrong? We’re in this TOGETHER and if we don’t stick together then where the hell does that leave us?

“Sticking together” doesn’t necessarily mean we all have to agree on everything. There are a lot of folks in the autism community saying things that I don’t believe in or agree with. But, dammit, if their kid(s) have autism or if they themselves have autism (or sometimes BOTH!) then can’t we support them in their right to say what they want and to support who they want? We don’t have to tear each other down or tell them we think they’re “wrong” and that we’re “right”.

It shouldn’t matter that we all may feel differently about HOW we think our children developed autism or that we may have different ideas about “cures”, “treatments” and “therapy”.

Whether you believe the CDC’s recent numbers regarding autism or not, whether you support Autism Speaks or The Autism Society of American, or perhaps a local organization closer to home, does it really matter when it comes to our kids?

As Jess at Diary of a Mom says, “Autism is one word but there is no one autism.”

Nor is there one cause, one cure, one treatment, one therapy. There is no one color, one religion, one culture, one belief…

We should each be able to promote OUR autism in any way WE want! And we must be respectful of OTHERS that are doing it in THEIR own way! We should all be able to light up our homes in any flippin’ color we want! Or don’t light it up at all!

In the autism community we shout at the top of our lungs for others outside the community to be aware of autism, be aware of the differences in those on the autism spectrum. We want the world to accept those differences!

How about we practice what we preach, people?!? Let’s show the world BY EXAMPLE, shall we? We don’t always need to agree with everyone on every idea or issue. But we DO need to be RESPECTFUL, both in our support or in our disagreement.

Today is World Autism Awareness day. April is Autism Awareness month. I want MY autism community to RESPECTFULLY support however we EACH choose to promote and support OUR own autism. THAT is what makes us a true COMMUNITY.